This very comprehensive questionnaire based research study was carried out by Dr Derek Pheby and colleagues at the Unit of Applied Epidemiology, University of the West of England.

The research was funded by The ME Association's Ramsay Research Fund.

The conclusions were obtained using information from questionnaires that were given to 124 people with severe ME and 619 people with less severe ME, who acted as the controls. The questionnaires were completed by members of The ME Association, the 25% Group, CHROME, and by people attending the National ME Centre in Essex and the Wiltshire ME service.

A key conclusion to the study is that the standard of early management appears to be the most important determinant of severity. Having a mother with ME was an additional risk factor - a finding that is consistent with an illness causing mitochondrial dysfunction.

Of particular importance is the fact that no evidence was found to indicate that conscientiousness, neurotic traits or personality traits are risk factors in the development of severe ME.

[NB: The research reported here was undertaken at the University of the West of England, Bristol, where
Professor Pheby was Director of the Unit of Applied Epidemiology, and Ms. Saffron was Research Associate
within the Unit]

Abstract

ME/CFS is a serious illness affecting several hundred thousand British people. Some 25% of people with
ME/CFS may be severely ill (housebound or bedbound), sometimes for decades. This observational,
questionnaire-based study was designed to identify risk factors for severe disease. Exposure to potential risk
factors, including familial risks, personality, and early management of the illness, was compared in 124 people
with severe disease and 619 mildly ill controls. Severity was determined by self-report and the Barthel (activities
of daily living) Index. Premorbid personality was assessed using the Neuroticism and Conscientiousness
domains of the IPIP scale. Analysis was by tests of association and logistic regression. Early management of the
illness appeared the most important determinant of severity. Having a mother with ME/CFS was also important.
Smoking and personality were not risk factors, neurotic traits being more frequent among the less severely ill.
Conscientiousness overall was not related to severity.

Generally I thought this was a nice, sympathetic paper with lots and lots of data available
to the read (sometimes one doesn't get to see a lot of the data).

Two small/very small quibbles:
(i) I think they should commented more on the physiotherapy issue e.g.
physiotherapy in the early stages of the illness, before and after diagnosis,
could lead to a poorer prognosis. I think if it was another area of medicine,
if one sees risk factors like this, one highlights them e.g. smoking is a risk
factor for x or whatever.

In my own case, I was mildly affected in the early stages and believe
physiotherapy (and related exercise I was encouraged to do) was a factor in me becoming severely affected. (I don't think I
took part in this study - I'm a member of the ME Association but they possibly
restricted it to members in the UK?)

(ii) it might have been interesting to subdivide vaccinations into:

a) in the month before became ill

b) every vaccinated (against particular infections

Table 12 says

"Immunisations, Allergies, and Infections in the month prior to
illness"

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however I think for immunsiations, that must be whether they were ever
vaccinated before becoming ill. I think the chances that they are the figures
for the month before the illness are small (e.g. 85.0% and 78.3% are the two
groups are listed for the polio group - think these much be lifetime figures).

There is an error in the discussion (it appears to me):

"Other less marked associations with severity
included an increased likelihood among severe
cases of having been immunised against
hepatitis B and smallpox, of having reported
allergies (except to pollen), or an infection in
the month before they fell ill, and of having
exercised six or more hours per week before
falling ill."

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However for vaccinations judging by Table 12 and the text alongside it, it
should be the opposite i.e. "Other less marked associations with severity
included an **decreased** likelihood among severe cases of having been immunised
against hepatitis B and smallpox"

I'll send a quick note to Dr Pheby, I think.

Overall, probably plenty of useful ammunition there particularly for those with
severe ME, who are probably most at risk of being portrayed in a negative light.

Nice article, Tom, I did an overviewof it (a bit too dense for my brain at the moment) and here's a good one that will make Reeve's hair raising a bit...Thanks for posting it.

Click to expand...

Thanks. Plenty there of use.
If ME/CFS is a condition that is brought about by personality and behavioural factors, one would think that the severely affected would be "worse" in these areas but they don't come out that way.

On another note, it seems that smallpox vaccination was the major culprit for those that had a vaccination onset. I wonder if it's a regional (UK) difference compared to the American/Canadian model?

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Remember, that this was just looking for differences between mildly affected and severely affected people. To see if something was a risk factor, one would have to compare with the general population to see if people with ME/CFS were more or less likely to have been exposed - something they didn't do. Also, I don't think the study is that good at looking at the vaccination issue as the figures for vaccinations seem to be lifetime figures - the figures are way too high, it looks to me, for the figures in the month before become ill. I've written to Dr. Pheby on this - if he says, they are the figures for the month before becoming ill, that'd be very very interesting but I can't see that.

With regard to smallpox, they found that 49.4% of the mildly affected group had had the vaccine versus 31.4% of the severely affected group and that this was significant. I am not sure how to read the statistics i.e. it is somewhat the opposite of what one might expect.

Thanks for the explanation Tom. I don't know if it only me thinking thatvbut there seems to be more studies coming out.Still impatiently awaiting the replication studies to come out, and words from Dr Mikovits. Now that we got the holidays behind us, scientists can kindly return to their microscopes, microarray, computer station, etc...

A point of information that people might be interested in is that Dr. Pheby has a son with it (given Dr. Pheby is not young - wild guess maybe 60 - the son is most likely an adult now but possibly not when Dr. Pheby became interested).
I tend to instinctively look for evidence of people who think we can just exercise ourselves better/think we can get better ourselves but I haven't found such attitudes with Dr. Pheby - he is much seemed much more interested in pacing, like other sympathetic UK experts.

I think the small pox vaccination numbers may be a red herring. I am fifty five and we all had small pox vaccinations. I don't know when it stopped being universal, but I think his figures are simply a reflection of age in the groups.

Certainly, if small pox vaccination was relevant the figures for ME or CFS would be much higher in older age groups.

I felt the overall tone was good and it was good that he spoke about people's problems with the questionnaires. Maybe further research will be done.

I think the small pox vaccination numbers may be a red herring. I am fifty five and we all had small pox vaccinations. I don't know when it stopped being universal, but I think his figures are simply a reflection of age in the groups.

Certainly, if small pox vaccination was relevant the figures for ME or CFS would be much higher in older age groups.

Click to expand...

That makes sense. The average age of the mild group was older. They didn't do logistic regression on the vaccinations e.g. adjust for age. I don't think they talked about it much in the paper - they weren't seizing on it.